Hi Frances, Sorry that you are here but am sure you will “handle” the new you/life with aplomb. You have done well to gain acceptance in a short while – I am about 6yrs few months since diagnosis and I vividly remember, but try not to dwell on, those early months where I felt I went through a grieving process for me and my life/future – bleak days. I am 5yrs 3 months post SCT and still drugs free. Life is good but it has taken such an array of emotions and mind sets to get here. The focus on SCT as though that would be the end of it but then the realisation of a new mindset to “watch and wait” and trying to lock MM in a cupboard. From researching/devouring everything about MM to now just keeping abreast of things – from MM constantly being in the forefront to it still being there but almost like an old friend now and with ease. I have always felt that the only way to live well with this is to recognise mindset is everything – from mindfulness to finding your own coping strategies that work for you. To this day I have a small book of inspirational quotes in my bag that I used to refer to to get my head round it all/focus on not wasting energy worrying to now just enjoying them as a prompt to stay in the light. It is all doable depending on the cards you have been dealt – or as one of my quotes pointed out “it is not always the cards you have been dealt but how well you play them” – I recognise that we cannot change disease biology but we can choose how to live life well inspite of our hand dealt. One of the good things I got from mindfulness is recognising that we are solely in charge of our emotions and if I am upset by something trivial it’s because I choose to be upset – often the easiest path to follow. Will stop my rambling now – Mm today at the forefront of my mind as just had my 4 monthly consult – all is well still but your post invoked in me a trip down my mental memory lane. It is a rollercoaster ride for sure but one where you will start to know the twists and turns and when to brace yourself and when to let go. It is all doable and I live a good life which has also involved changing priorities and goals for the better.
Take care,
Rebecca
Hi Richard, Great to hear you are still ok – I like to keep looking on the site to see how everyone is faring.
For those that are still in the dark/twilight zone of it all my Friday has consisted of an individual tennis lesson followed by 2 hours group coaching – pub lunch and a big tennis match tonight! Life will resume from the pit stop but with a more heightened pleasure and with more assertion of priorities in life. Believe that this is a Marathon and not a sprint.
Rebecca
Hi Stanley, Warmest congratulations – how time flies! Hope you are celebrating in excess/style. Glad to hear life is good to you – including work (I remain unapologetically work shy on my 2 days only a week still). I am now 5yrs 3 months post SCT and feel well still(hopefully confirmed by consult next week). You’ve put a smile on my face tonight as I always get great pleasure in hearing these milestone success stories and hopefully it will give a little boost to the newly diagnosed when it all seems like fighting in the dark and wondering if you’ll ever see the light again. Let’s make it a date again next year – same place!
Rebecca
The 14:16 translocation is controversial somewhat re risk (at one point it was classified as standard) in that it aggressively attacks kidneys but does not necessarily mean it is aggressive to treat – as with me. Obviously my kidney function will hinder future treatments but I may have recovered them fully had I not been on the misdiagnosis route by my GP – but it is what it is. My light chains were about 1200 only and kidneys at 5-7% on diagnosis currently at 30. Velcade based treatment seems to be good for response but they will change/throw in something else if they cannot get your light chains as low as possible pre Sct. I am now monitored every 3-4 months now as my kidneys appear stable. Post sct think it was weekly/monthly then extending as stability sets the pattern. I have a barrage of blood tests that will give you full blood results, kidney function, kappa/lambda levels and ratio.
Ok. I had the same worries also at diagnosis – i was 50 my kidneys took the hit and I had a poor prognosis re cytogenics 14:16 in that only a few light chains seriously impact my kidneys and is v aggressive on me. I had to fight for an Sct due to kidney damage and no access to maintenance as currently offered only on trials. This is my take on it all – we have a relapsing/remitting cancer and whilst new drugs are being made they are not unlimited – maintenance takes up an option in remission state and the same drug will be given as a treatment at some point down the line until it stops working. Whilst you are statistically high risk/poor prognosis remember mm is unique to the individual – i responded easily to treatment and am over 5 years post SCT drug free and living life as normal. If you read the Myeloma beacon you can find lots of stories that buck the statistics so don’t think what they are telling you will ring true for you – often how you respond to treatment is the best indicator. As with all things MM it is one step at a time and unpredictable – you will continue on a chemo drug until it fails snd then they’ll change it – you will have the transplants – the second smaller one being like a consolidation treatment – kinda like a big blast of maintenance all in one go. Then you will be in remission living life as normal with no clear future plan of treatment until relapse and then “what next” will be figured out dependant on length of remission etc. It is best to try and look at it one stage at a time only otherwise it will be very hard mentally. In time you will realise this is a marathon not a sprint and so the urgency of planning the future will wain as it is dependant on many “unknown” factors. MM, for me, was/is more of a mental battle than a physical one – so try and focus your energy on strategies in your control to live well with this. “Living in the moment” is often quoted and it is so true along with finding early on coping mechanisms that will work well for you – and your family.
Hi Brendan, sorry to see you here and unfortunately can’t really answer your queries – i have had SCT only but if you search for tandem trabsplant on the home page you will access previous discussions from those offered it and those who did it. You may also find it useful to discuss with myeloma information line as am sure they will know how common it is etc. i think it is not very common as usually offered to the younger/fit patients. What are your cytogenics that make you high risk? and does this correlate to how you have responded to treatment so far?
Rebecca
Oh dear Helen, Thank you for taking the time to update your supporters/virtual gang at this time. The only comfort I can gain from this turn of events is that I believe you will approach the inevitable finish line like the way you have approached the whole journey – in control of events as far as able, informed, prepared and surrounded by endless and timeless love and support. I hope you get to do everything you need to do from here in and make peace with it all. Thank you for your informative posts that have helped many and thank you for giving us a glimpse into the life of a very strong, positive role model – much needed for those newly diagnosed, bewildered and floundering at the prospect of a “new” type of live. Take care and live life large. Rebecca x
Hi Cassidy, I don’t think I’ve seen any previous posts from you and just wondering about your diagnosis and treatment/kidneys. Unfortunately my kidneys were severely damaged on diagnosis etc (but have recovered some function) but I am always interested to understand the paths/decisions taken by others with kidney involvement if you don’t mind sharing your experience.
Thanks Rebecca
Hi Tom, Glad to see you back on this site but obviously not glad to hear you are back on treatment. I saw Dr J today and am pleased to say I will be 5 years post Sct at Xmas and still drug free and in remission. Never thought I’d be saying that 5 years ago! Dr J keeps trying to get me to do 6 monthly tests now but I will only do 4 months and thankfully he is happy to oblige. Did you first relapse after 6 years?
Rebecca
Hi Paul, I was 50 when diagnosed at a critical stage – I have the Mm that affects kidneys rather than bones. I have a very aggressive type in how it impacts my kidneys but that does not mean it is difficult to treat. If you do have MM remember one thing – it is a unique disease and how it affects the disease/reacts to chemo is also unique. I have high risk factors making prognosis dire but it responded to chemo and I had an SCT within the year. It will be my 5yr act anniversary at Xmas – totally drug free and in remission and 6 years since diagnosis. Staging is not really important it’s how difficult it is to treat that counts. At my little hospital I met a lady who had 2 treatments in 12 years and on both occasions used the same chemo because it worked well – leaving lots of options still available. There are many successes so focus on this because you are younger and fitter than most to combat this disease (if you have it). One major thing I have learned is the treatment is easy in comparison to what goes off in your mind – so devote time and energy to acquiring the right mindset – living in the moment – one day at a time – it is like self harm re-living the impact of death on everyone else’s life so don’t go there! Focus on the “now” and explore coping strategies to assist you in this. Near 6 years on this is the first year I booked a holiday 6 months in advance! and I’m currently in remission. It is a real head **** so look to managing this aspect as this is totally in your control and will make everything seem so much easier. Fingers crossed it is not MM but if it is you’ll cope – it’s a long bumpy ride but you’ll manage it.
Rebecca
Hi Sue, I am so sorry to hear of your short remission and if you are deemed as relapsing then you have some very big decisions to make. If it were me I would first seek out, at least, a second opinion with a leading Mm specialist – if you phone the helpline they will recommend some. If you wish to research/seek opinion I would duplicate this post on the US Mm Beacon forum ( stating you are in the Uk). There is a wealth of knowledge and personal experience of the double transplant on the site along with Car T discussions. This is such a big decision please ensure you feel fully involved/comfortable with the decision making process and, for me, that means having a dialogue with other specialists and helpline – who may also be able to advise on trial eligibility/availability.
Good luck
Rebecca
Hi Stu – I think long stays in hospital are not uncommon when you are diagnosed at a critical point and with other damage. Your mums low kidney function requires monitoring closely whilst on chemo and until deemed stable and treatment is often prolonged with kidney issues as often less aggressive. I think the fluctuation in kidneys will correspond directly with chemo treatment and then you’ll see a gradual rise once the bulk of the chemo is out of her system. When first diagnosed I was about 10 gfr after initial rehydration therapy and as they didn’t know the cause I was about to be transferred for dialysis but this was stopped when MM was discovered and the initial chemo improved the figure slightly. I was in hospital for about 6 weeks and allowed Home at 16 gfr stable with a good reduction in the cancer and going back for weekly treatment. I could function fine at 16 below 10 makes dialysis – even temporarily- a possibility. When your mum is felt to be on a stable recovery path I am sure she will come home. I felt very vulnerable coming home as there is a real sense of security being treated in hospital having people on hand daily. She will, of course, be well supported when Home and can call in with any concerns etc but I am sure she will overall feel better in hospital until she has reached some stable figures. This is a marathon not a sprint and everyone’s journey is slightly different – just try and celebrate the small improvements and recognise the cyclical ups and downs of chemo treatment.
Rebecca
Over the years I have made many imaginary “what if” swaps! Have been more hung up over kidneys than MM(now 55yrs) – I was always told there can be no further improvement but whilst it has been a veeery slow climb I don’t Think I’m at the end of it. I corresponded with a guy who had similar improvement as the chemo free years went by and his friend SCT’d on dialysis and 5 years later he came off dialysis – so I always seek out the success stories and hope to follow! I too do a lot of exercise which I attribute to everything good that has happened. I do not try to alter my gfr etc by diet as life’s too short but am sure I could squeeze 2+ gfr from diet if I tried without bargaining with you! I was ecstatic when I hit 30 and remained at 32 for probably a year before gradually progressing at a snails pace again. Carry on running and am sure you’ll carry on improving – though not at the same pace!
Rebecca
Hi Richard, I too suffered kidney loss on diagnosis after chemo was told 16 gift was as good as it would get. When I harvested and had Sct it was around 25 and stable. I am now 4yrs 8 months since Sat and still drug free and my kidneys have very slowly improved to a stable 39! My hope is they will hit 40 but have been 39 for 7 months now. I think there is always scope for improvement.
Rebecca
I didn’t like to mention my dislike of the new changes but now I know it’s not just me! Funny how little things can change ones perspective/interest in a site.
